CFS/ ME experiences?

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Anonymous #1
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I'm unsure if I may have CFS (Chronic fatigue syndrome) and would really appreciate info on what it is actually like to have it. I've read about it and it sounds like i have all the symptoms, but I still don't quite get what it's like (the extent of the symptoms, the time frames and any other details). What sort of things can cause it? I do have conditions that could explain some of it, but not all of it and while they are getting better I'm not feeling any better.
Also if anybody has any advice about how to mention it to my dr...?

I do tend to be a bit of a hypochondriac at times, but i'm also usually right (or close). People tend to think that i'm tired because i think i have a problem or that it's all in my head somehow. I just want to find out if there is actually a decent reason that isn't my fault somehow.
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furryface12
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I'm not very good at describing stuff like this but I'll have a go. My CFS/ME started after a very stressful period and some kind of virus about two years ago, I think it's fairly common for it to be post-viral but that doesn't always happen. Symptoms and intensity obviously very a lot person to person, for me at the moment it's constant pain and dizziness I struggle most with and also the constant brain fog which drives me mad. Some people find they want to sleep almost constantly whereas I have huge problems trying to sleep (I say at 7am when I've had none ), and my concentration and attention span are also very poor. It does vary a lot day to day, I can push myself very hard to have a 'normal' day or there abouts but will then be very ill for up to a week later- in general it's a lot better to pace yourself and try and do a similar amount every day and gradually increase this but that's something that I personally have found very hard to do. I'm lucky in that I can do a few hours of activity most days, in other people they can end up wheelchair or bedbound pretty much all of the time.

In terms of diagnosis, you could mention it to your GP but in my experience it tends to e something diagnosed as a last resort when they can't find anything else causing it, so they'll rule out a lot of other things with blood tests etc first. There are various treatable conditions that can cause similar fatigue and other symptoms so they obviously want to work these out if they can.

Whether it's CFS or not, it's most likely not your fault you're feeling like this. Go to your GP and explain how you feel and see what they say and if they can work it out, a good doctor should take your concerns seriously whatever the reason behind them. There's also the CFS/ME society on here so it could be worth an ask there. Feel free to ask any questions that's just what I happened to think of writing, sorry for the long and possibly very jumbled up post!

Edit: forgot the link- it's here http://www.thestudentroom.co.uk/showthread.php?t=796282. Hope that helps!

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Anonymous #1
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(Original post by furryface12)
I'm not very good at describing stuff like this but I'll have a go. My CFS/ME started after a very stressful period and some kind of virus about two years ago, I think it's fairly common for it to be post-viral but that doesn't always happen. Symptoms and intensity obviously very a lot person to person, for me at the moment it's constant pain and dizziness I struggle most with and also the constant brain fog which drives me mad. Some people find they want to sleep almost constantly whereas I have huge problems trying to sleep (I say at 7am when I've had none ), and my concentration and attention span are also very poor. It does vary a lot day to day, I can push myself very hard to have a 'normal' day or there abouts but will then be very ill for up to a week later- in general it's a lot better to pace yourself and try and do a similar amount every day and gradually increase this but that's something that I personally have found very hard to do. I'm lucky in that I can do a few hours of activity most days, in other people they can end up wheelchair or bedbound pretty much all of the time.

In terms of diagnosis, you could mention it to your GP but in my experience it tends to e something diagnosed as a last resort when they can't find anything else causing it, so they'll rule out a lot of other things with blood tests etc first. There are various treatable conditions that can cause similar fatigue and other symptoms so they obviously want to work these out if they can.

Whether it's CFS or not, it's most likely not your fault you're feeling like this. Go to your GP and explain how you feel and see what they say and if they can work it out, a good doctor should take your concerns seriously whatever the reason behind them. There's also the CFS/ME society on here so it could be worth an ask there. Feel free to ask any questions that's just what I happened to think of writing, sorry for the long and possibly very jumbled up post!

Edit: forgot the link- it's here http://www.thestudentroom.co.uk/showthread.php?t=796282. Hope that helps!

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thank you that was really helpful!

I have other conditions that could be causing it but they just don't seem to fit everything. I have vitamin deficiencies but they've come and gone while this feeling has stayed.
it's not totally constant for me and some days I'll be able to have a good few hours of "normal" before crashing.
sometimes I'll get out of breath just walking upstairs and then sometimes I'll be able to do a few hours of proper exercise like climbing out tennis. Is just so random.

do you know anything about stomach upsets with it? That's the thing none of my conditions have explained so far. I have near constant slight stomach ache that sometimes fairs up into proper upset, it seems random though.

I just feel like this explains all of my symptoms so much better than anything else. Maybe I'm just being a hypochondriac, but it just seems too close a fit to ignore.
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furryface12
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(Original post by Anonymous)
thank you that was really helpful!

I have other conditions that could be causing it but they just don't seem to fit everything. I have vitamin deficiencies but they've come and gone while this feeling has stayed.
it's not totally constant for me and some days I'll be able to have a good few hours of "normal" before crashing.
sometimes I'll get out of breath just walking upstairs and then sometimes I'll be able to do a few hours of proper exercise like climbing out tennis. Is just so random.

do you know anything about stomach upsets with it? That's the thing none of my conditions have explained so far. I have near constant slight stomach ache that sometimes fairs up into proper upset, it seems random though.

I just feel like this explains all of my symptoms so much better than anything else. Maybe I'm just being a hypochondriac, but it just seems too close a fit to ignore.
Yeah variability for me is one of the hardest things about CFS, it makes it so difficult to plan anything. I could say now that I'll meet my friend for an hour next tuesday, but I have no idea if next tuesday would be a good enough day to be able to do that without pushing myself too far. To an extent I can control it by making sure I don't do too much on the days before ('payback' in CFS tends to be the day or days after doing something, not always immediately- not sure if that's something you get?) but sometimes it's just random.

I don't know as stomach upsets are actually part of it, but IBS is very common in people with CFS and I know that I've certainly become a lot more sensitive to food and other stuff since I've had it so it wouldn't surprise me. I don't know if it's just random though or if it's reacting to certain foods etc without me having worked out what it is.

It does sound like it's worth a thought yeah, even if it doesn't turn out to be CFS it could be something similar. As I said before, there are several conditions (eg fibromyalgia, POTS, EDS, thyroid problems) that can cause some similar symptoms but ask your GP and see what they say.


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Raiden10
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I don't suffer CFS but a girl on my course did once.

I think it's worth looking into proteasome and autophagy. This article doesn't mention proteasome but it's closely related (proteasome = forehand, autophagy = backhand).

Anti-prion/alzheimers/parkinsons things like Ginkgo Biloba, Rapamycin, Resveratrol etc. work by upregulating autophagy and proteasome activity, and making the process more efficient.

It also connects chronic fatigue and insulin signalling. It's connected to gut-health, as a healthy gut produces plenty of butyric acid, that helps with autophagy.

http://www.wellnessresources.com/hea...nd_fibromyalg/

And this article: http://jdmoyer.com/2012/02/01/death-will-eat-itself/

Diets that induce autophagy include diets lower in methionine, lower in protein generally, high in fibre, and avoidant of sugar. Carbs are fine, provided they are unrefined. Raw potatoes are fine. Fat is fine.

Fat from plant sources is very healthy. Dark chocolate is amongst the healthiest foods in existence, and it's 55% fat.

My strict anti chronic fatigue diet: Meat/Fish/Eggs/Cheese no more than 4 times a week. No sugar. Lots of vegetables, nuts and mushrooms. Take a decent B-vitamin (e.g. Jarrow B-right).

Don't change overnight to this, or indeed any, diet. Change slowly. Rapid dietary changes are never healthy.

That's my advice, use it as you please.

One more link: http://www.cortjohnson.org/blog/2014...igue-syndrome/
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